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Infertility

Rant about Guys Hospital

41 replies

Willieowinsbury · 18/09/2017 15:55

Does anyone else find it impossible to get any questions answered by Guys ACU?

I can never get through on the phone line and they are terrible at answering emails. We have two frozen embryos that I want to get on and transfer (individually) and they are holding it up for a reason I don't fully understand and no-one will explain to me.

The letters they send are so delayed that the second embryo transfer had happened by the time they sent a letter about the first, and the information on the write ups is incomplete and incorrect. I don't even know who to take it up with.

They are nice when I am actually at the clinic but sheesh, this is driving me up the wall. And the counsellor hasn't replied to my three messages since July, asking for a session.

If anyone can recommend an organised clinic in central london for our next cycle (icsi for male factor/ endo) which I'm sure we'll need as our remaining two blastos are not great ones, I'd be very grateful.

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justtheonethen · 18/09/2017 16:02

That all sounds really frustrating. I have just had a successful cycle with kings and they were great. Lovely people to deal with. Easy to get hold of on the phone and whilst letters came a bit late (was an NHS patient) they were accurate.

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justtheonethen · 18/09/2017 16:03

Also, the counsellor replied and fit us in swiftly!

Good luck with it all. It's stressful enough without added stress!

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JoJoSM2 · 18/09/2017 16:09

What a nightmare! Are you self-funded? If so, then I'd recommend Zita West. We've just done ICSI there (actual procedure carried out in a Care facility by Zita West doctors). They are super-organised, usually get back to you the same day, appointments always run on time (or a few min late at the most and they are very apologetic then). They always make time to answer your queries, explain things etc. Very organised with tests, prescriptions etc. At the same time, they are pretty relaxed and friendly so generally a nice place to go.

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Willieowinsbury · 18/09/2017 17:01

Thank you both for your recommendations! We had one funded cycle at Guys, but as we have now moved CCG to an area where they fund three rounds I am praying that we might get another two funded. If not, or if there is a really long waiting list, we will scrape together the funds for a private cycle. I'm just scared about all the (hocus pocus?) add-ons some clinics seem to foist on desperate couples, and if you reject the add-ons and fail the cycle then maybe they will say that's the reason.

We are going to an open evening at Care but I will look into Kings and Zita West Smile

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RubyBoots7 · 18/09/2017 18:16

Different CCGs fund different clinics so it's prob worth finding out for your new local one first before you get your heart set on somewhere?
We've been through CRGH in central London. They've been great.
Funnily enough Guys was on our CCG list and we struck them off our options right at the start because they never answered the phone Smile

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Willieowinsbury · 18/09/2017 20:13

Good point - will be Camden CCG. Wish it was a bit easier to find these things out in advance. I imagine UCH will be one, which I believe does IVF in tandem with another clinic - maybe CRGH which would be good. I think their wait list is pretty long via NHS but maybe with good reason. Thanks for your advice.

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JoJoSM2 · 18/09/2017 23:37

Lucky! I hope your NHS cycles work out.

Re the hocus locus extras - we are actually being treated by the very doctor that they saw with a hidden camera in that awful Panorama last year. Frankly, the programme really angered me and I found it dishonest of the reporters. The clinic and the doctor are lovely. We were initially diagnosed by another clinic and they just went by their results without asking for any more tests. They dissuaded us from extras that I wanted to get and I literally needed to chase them to pay for the IVF (just a couple of days before egg collection!). Their pricing is extremely clear and posted on their website.

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Willieowinsbury · 19/09/2017 09:37

Wow, that's pretty bad for the doctor's business if they are misrepresenting him. It doesn't surprise me that the journalists are telling the story they want to tell though 🙄.
I'm pleased to say I've actually had a reply to my final, losing my tether email that I sent them - just saying they are sorry and will look into it and ask the counsellor to contact me but at least that's a start.

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isthismummy · 23/09/2017 08:54

Don't get me started on Guys hospital.

I had my one and only private round of ivf cancelled by them in March. They diagnosed POF off the back of a single wrongly timed blood test, and that was that!
Then at my follow up the head of unit informed me we could have a round of funded egg donation if we could find a donor. I later found out that we would also be expected to pay for all the donors scans, blood tests and both their medication and my own! I was also told by head of unit that he "wasn't a counsellor" when I mentioned how distressing having my ivf treatment cancelled had been and that "there are far worse things" than having to use and egg donor.

You can never get through to them on phone. I'm the end I had to start emailing the head of unit directly to get a response. Their counselling service is a joke. I got three sessions three weeks apart, and the counsellor was like a walking cliche.

All in all I feel like I received appalling treatment there and I'm still suffering the emotional after effects now.

Rant over. I just hate them so much!

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SanJunipero · 23/09/2017 09:12

We had IVF/ICSI at Create (the St Paul's branch) and found them helpful and efficient. Emails and phone calls were answered quickly and it was easy to get appointments at times that suited me. They're not into pushing 'extras' so worked out to be an affordable option. Good luck!

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isthismummy · 23/09/2017 09:32

Private round? I meant NHS round!

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Willieowinsbury · 23/09/2017 10:46

Eek, that is awful, isthismummy. Can you appeal on the basis of another blood test showing you don't have POF? And for them to belittle the effect of egg donation, just wow.
I was hoping the counselling might help with these awful feelings but sadly even if they do ever get back to me, sounds like it was no help at all to you. I used to be such a happy person.

Thanks for the tip, SanJunipero - that's where my husband had his first, fateful SA so might make sense to bring it all full circle!

Aso now considering Reprofit in Brno so at least if it fails, I don't have to see the building on the skyline reminding me of the trauma every day 😂😭

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isthismummy · 23/09/2017 11:27

Sadly an appeal would be pointless Willieowinsbury I've since been to Serum in Athens for Hysteroscopy and they've said my egg reserves are so low that I'd probably only be suitable for natural cycle. So in a way Guys weren't completely wrong. Although totally wrong to tell me I'd never conceive on my own.

I didn't find the counselling that helpful, but you might have a different experienceSmile I felt like my counsellor was towing the clinics line, whereas I just wanted to rant about how shittily they were treating me. So it didn't really gel between us very successfully.

I've heard good things about Reprofit. I considered them myself at one point. I only really plumped for Serum because I'd heard such good things about their Hysteroscopies. They are a brilliant clinic though and I'd highly recommend them to anyone.

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isthismummy · 23/09/2017 11:28

Serum are brilliant I mean. I don't have personal experience of Reprofit.

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isthismummy · 23/09/2017 11:30

Oh and lol at skyline trauma. You'll never have to look at that wierd wall art again with all the ties representing abnormal sperms again. Wtf is that all about? Way to make any men already feeling inadequate feel a bit worse or what?Shock

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TurquoiseDress · 23/09/2017 13:01

Interesting reading all the comments about Guy's hospital.

I've got an appointment at the end of the month there- got referred by my GP after DH's sperm morphology was found to be 1%

We've been TTC no.2 for 14 months now, it's been 15 months since my MMC (found at dating scan).

I know that we will have to pay ourselves if we go forward with any treatment.

Very interesting comments about Guy's- it's already put me off going there if we need to go down the assisted conception route!

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TurquoiseDress · 23/09/2017 13:04

This thread has made me shudder a bit.

Until very recently I knew nothing of the world of sub/infertility and all the private clinics that are out there.

But the more I read, the more off putting I find it all, like you cannot trust anybody, as a couple becoming more desperate to have baby number 2, I feel that there is a lot of (potential) exploitation out there!

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isthismummy · 23/09/2017 13:10

So sorry to hear about your mmc TorquoiseDress

Well I was NHS at Guys, so as a private patient you might be better treated, but I personally wouldn't risk it. They have very much a one size fits all approach to treatment. One consultant actually smirked when I asked about vitamins etc to improve DH low motility and my poor egg reserves. She told us to just take folic acid and that everything else basically had no effect.

I really feel that for private treatment going abroad is the way forward. I went for a private consultation at City Fertility in London and the consultant there was horribly dismissive too! Serum in Athens is the only place I've been where people were kind, positive and helpful.

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TurquoiseDress · 23/09/2017 14:16

Thanks for sharing your experiences isthismummy

I can't quite get my head around the fact that we might need IVF to conceive baby number 2, especially when my previous 2 pregnancies really just happened without any planning/timing etc.

Also, I'm under no illusion that there is going to be any hand-holding or touchy feeling or maybe even empathy- the world of fertility clinics seems v much a business and it's got a captive (and pretty desperate) pool of potential patients.

Your experiences at Guy's really doesn't sound nice.
I am prepared for them to give me bad stats/low expectations because I am now 39, DH a bit younger but our main issue seems to be sperm quality.

A dismissive or smirking consultant is the last thing that you need.

When I let my mind wander a bit, going abroad seems to be the best thing for us- really to do with the cost. We are London based so of course going to a clinic locally would be much easier.

But I don't know...I seem to have a bad impression/opinion of all fertility clinics and have never gone near one before.

Where are you on your journey so far, if you don't mind me asking?
Apologies if I have missed info that you've given already.

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isthismummy · 23/09/2017 14:30

It is very hard to know what to do for the best TurquoiseDress The costs are so astronomical and you really want to know you're doing the best you can for your situation.

Well after Guys wrote me off we had to look abroad as there is no way we can afford treatment in the U.K. I picked Serum in Athens because I'd read so many positive accounts from women who've gone there. DH and myself firstly did their hidden infections tests which came back positive. We had antibiotic treatment and I conceived shortly after that in June. Sadly I had a mc at 5 weeks. Travelled to Serum at end of July for Hysteroscopy which revealed a uterine septum and extensive scar tissue. Clinic have told us there's still a chance I may conceive again naturally, but I'm now on CD 60 and going out of my mind. They've told me the next step is natural cycle, but I'm feeling very torn. We have limited funds and part of me just wants to go straight to donor eggs to up our chances. Feeling very low about things atm.

I can't speak highly enough about Serum though. Penny the director is so lovely and compassionate. They really make you feel cared about and like they want to do the best for you.

Do you have any idea regarding your amh levels? Because if they are decent for your age then there's no reason you shouldn't be in with a chance🙂 Poor morphology can be overcome with icsi. Also certain vitamins/life style changes can help improve sperm quality. Serum put my DH on a sperm improvement protocol which helped his motility improve, although it's still fairly low unfortunately.

My advice would be to do your research, check out the forums etc, but ultimately go with your gut decisions on what to do and where to go. It's such a personal journey and I really believe that following your instincts is the best way to go. Good luck with it allSmile

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Willieowinsbury · 24/09/2017 05:46

Both of you have had a rougher time than me with your MCs. Closest I've been is a chemical after the fresh cycle.

Agree about the weird wall art, haha! Must be really hard to choose between natural cycle with all hopes pinned on one little egg, and especially if the sperm are dodgy too, or go for donor egg. I'd like to have natural or mild in some ways as I'm terrified of being in agony after egg collection again. I did phone the emergency line to say how ill I was but they didn't seem worried...until they saw the size of my ovaries at transfer 🙄

I'm going to look at Serum now too - personal endorsement is all I really rate at the moment in these shark-infested waters.

Hi TurquoiseDress. In a funny way despite my rant I think Guys are good at the medical side, it's just the communication problems and feels uber 'nhs' if you know what I mean, with all their usual problems. If it had worked first time I probably would have raved about them, it's just the more it fails, the more sides we naturally see of them and the more bitter I get. Was at a wedding yesterday and already wondering if the new pair will have a baby before we do.

Also I think they won't endorse anything that's slightly leftfield, hence no vitamin recommendations even though I think they probably do help. They also don't buy into hidden infection screening, but I'd love to have it done - probably not proven enough to make it cost effective, but anecdotally it seems to make a difference. At least they are not peddling snake oil so I would trust them not to do the same to private patients. Maybe a bit too far the other way!

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Michelle404 · 26/06/2018 16:05

I know this is from last year, but wanted to add Guys are still horrific!
I've had nothing but stress. Complete incompetence with admin and keeping my file up to date. Inability to communicate info to other departments in a timely manner. Zero empathy.
Never answer the phone and if they do they often hang up on me.
Cause unnecessary treatment delays.
Utter apathy and laziness, like they think the patients should be grateful, regardless of the service they provide. I get the feeling they view fertility treatments as a luxury and you are lucky to get whatever they deem to throw at you. They disjust me.

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Janefx40 · 29/06/2018 09:22

Hi Michelle,

I saw your post and have to agree. I had my second cycle at Guy's having had another elsewhere. It was pretty shocking all around from the lack of empathy (although staff are ok in person), incompetence (they made a massive error in my treatment by forgetting to give me 2 vital drugs and frequently gave me the wrong amounts of drugs on prescription) to being utterly impossible to contact.

Having said all of that our cycle miraculously worked and I am 11 weeks pregnant - so something went right and miracles do happen.

I was sorry to read back through previous posts because some people seem to be worrying that all clinics are the same and it just isn't the case in my view. The other clinic I attended were caring, efficient and effective.

Plus Guy's like to convince you that the extras some clinics offer are rubbish but then they are sooo extremely conservative that they ignore all evidence that isn't multiply clinically trialled - it takes time for that to happen. Personally I think if there is reasonable clinical evidence that something may help and it is proven not to be harmful, then giving women the option is fair.

Well anyway I feel your pain. Stepping into the building makes me anxious!

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LemonTwist10 · 17/07/2018 15:03

Hi ladies

I too wanted to add that I find Guys to be the best part of a bad trip. My partner and I were referred this year. Completed initial consultation, implication counselling and so on. Since then I received a letter which they did not pay for postage, I spent £2 collecting it from my local sorting office, in the end the letter was informing me about how to book an initial counselling session (which I already booked and had) a few weeks prior.

Also I have booked an appointment with the donor department for August, however, I received a call the other day asking me to arrange an appointment to come in. I asked the lady on the phone what it was for and she couldn’t tell me.

I’ve attempted to contact them on the phone since yesterday and no joy, they don’t pick up. Also, sent emails asking for the above to be addressed, she responded but didn’t if that makes any sense as she failed to answer any of my queries.

Also it was worded poorly, I had to read it several times to actually figure out what she was trying to say as for some reason punctuation wasn’t perceived necessary when she composed her email response.

My partner and I are seriously considering moving to another clinic as this is too much. It’s so stressful and I don’t think I can do it much longer as I want to be relaxed and happy for when I attempt my first IUI.

Sadly, this is my story...

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LemonTwist10 · 17/07/2018 15:08

Also I wanted to add that having to purchase sperm online, pay for storage and shipping is equally frustrating. Most private clinics do it for you which I find much easier.

I find with Guys, although I am self funding, you still get NHS treatment. However, if you pay a premium for “personal treatment” or something like that, you have the benefit of seeing the same convulsant, who will also perform your procedure and you will also have his / her mobile contact number to use at your will.

However, I don’t think there should be levels. You’re either self funded (private) or your not. I am seriously considering moving.

I would love if there are any up to date suggestions of clinics in London / Surrey.

Thanks bunches

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